Dna Today: A Genetics Podcast

Dr. Daria Julkowska joins the show for Rare Disease Month as the Coordinator of the European Joint Program on Rare Diseases. This organization was newly established in January 2019. Daria is of Polish origin but she has lived and worked in France for the last 18 years. She has a PhD in molecular biology and is involved in rare diseases research and management for the last ten years.The European Joint Program on Rare Diseases represents 89 partners across the EU and beyond. Internally, the partners include research funders, research institutions and infrastructures, hospitals and of course patient organizations. The program is financed by the EU and the states participating in the project.On This Episode We Discuss:Motivation to Start the OrganizationGoals for the Rare Disease CommunityCountries RepresentedRare Disease Visual PlatformAdvancing Rare Disease ResearchOngoing Research ProjectsFunding for ResearchCombating Exorbitant Costs of Treatments (Ex: Spinraza)Rare Disease Day/Month InvolvementHappy Rare Dis